Many years ago the Bedsock and I were in the car listening to 'Any Answers' on Radio 4. The topic was along the lines of the way society dealt with criminals. Mrs Angry of Tunbridge Wells phoned in to say that "criminals should have the fact tattooed on their foreheads so we will all know who they are!" We laughed long and hard at this and it became one of our private catchphrases with reference to identifying ne'erdowells.
In the past twenty years of my disablement through ill-health (Myalgic Encephalitis) I have learned one truth.. people like their 'disableds' all neatly wrapped in wheelchairs so they know who they are.
I have written before about the definitive moment of my illness when I realised just how and why ME sufferers were likely to be vilified. Whilst being pushed around Brighton Shopping centre in my wheelchair we found the lifts full of kids playing around. As the BedSock wheeled me over towards the escalators, a woman and her friend smiled kindly at me. But her smile turned to a coarse shriek of outrage when I got out of the chair for the BedSock to carry it down the escalator. "Look at that!!! There's nothing wrong with her!" she shrilled, angry that I had robbed her of a smile.
In general we try and live by the rule that we make the best of any
situation.. not dwell on what my illness prevents us doing, but to have
as much fun as possible with what we can do. But you must allow me a little bitterness.. not because of the ignorant
woman in the shopping centre, not because of the kid who spat at me in
Avignon on our somewhat ill-fated first 'wheelchair' holiday when I wasn't really well enough for it. Not
because of the posh woman who leaned over my lap at an Apple Fair, her
tweed jacket brushing my face as she reached for a slice of fruit saying
"You don't mind do you?" I did mind. No - what makes me bitter is that after twenty-six years in a house and area I once loved, I now think of my road as
'Disabled Hate Street'.
So what changed? When we moved here I was delighted with the Victorian terraced house, its fair sized garden, the generally decent community, in a prized part of Brighton. The neighbours were fine too - we have always tended to be a bit reserved rather than overly friendly with those at close quarters, but have discretely kept an eye out for the elderly or isolated. We were lucky with our nearest neighbours, Molly next door and her family always visiting. Walking out into my garden I would often be greeted by gales of noise and gossip blowing over the fence as Molly and her friends laughed hilariously over some joke or story. Heart warming, life affirming laughter. They reminded me of slightly risque 1950s postcard ladies - naughty but nice. There was Brunhilde, the German lady, who invited us around one afternoon and proceeded to drink us under the table. An outspoken no-nonsense woman who once caused us a great deal of amusement by bellowing down the gardens at another neighbour's offspring "Be quiet children! You are not on a council estate now!" Hilariously rude but remarkably effective - I only wish she was here to shut the current batch of screaming kids up. Flora a sharp, intelligent, elderly Scots lady, as impatient with her infirmities as she was with the new computer skills she was acquiring in her eighties. We corresponded by email in her last years sending each other news from the 'other side of the fence'.
All these have now moved or died - the greatest loss being Molly. One day Bill her aged lodger called over the wall that he needed help as Molly, who had been sitting happily in the sunny garden, had gone into the toilet a while before and not come out. I rushed round, managed to ease the door she was slumped against open and squeezed into the tiny space, cradling her in my arms as Bill called for an ambulance. I chatted gently to her, how much everyone loved her, how pretty she looked in her dress, how wonderful to have been out in the garden on such a day.. I'm not sure she heard me.. I think she had already gone.. but she would never have doubted all those things. Such was the love of the community for her that at her funeral the local church was packed with many standing at the back.
Molly's death marked the end of an era and the beginning of an influx of uncaring, self-interested people, often younger families. The sound of genuine laughter replaced by the constant whining and screaming of spoilt, angry children and the equally constant, ignored, reiteration of "get on the naughty stair". Their lives and conversations foisted onto the unwilling, captive audiences in neighbouring houses by the fashion for converting the backs of these houses into big openable glass doors. The cushioning effect of foliage lost, as one by one each lovely, cared for, garden is ripped out and replaced by nothing but bindweed and discarded kids toys.
Initially I didn't want a disabled parking space outside my house. At that time there were rarely problems parking and I disliked the idea of having so prominent an advertisement for my condition emblazoned across the road - like having the word "criminal" tattooed on a wrongdoer's forehead. Nevertheless, as more and more cars filled the street making it uncertain whether I could park near my house, I was finally persuaded. If I couldn't guarantee a parking place I couldn't go out - as simple as that. All was well for a few years and then the trouble over the disabled space started.
I awoke early one morning to find a parking fine attached to my car. There had been a spate of cars broken into and badges robbed in the area and I was worried that someone might damage my car badly in an attempt to steal mine. I had been taking the badge out of the car at night and putting it back first thing in the morning. In the many years we had lived here we had never seen a traffic warden around - why would they come to this peaceful residential area? Nevertheless, my mistake, and although I wrote explaining the situation I still had to pay the fine. Too bad. A few months later, totally fatigued after having been out for shopping, I forgot to put the badge up on my dashboard. At 7.20 the following morning a neighbour from across the road rang my doorbell and woke me - my car was in the process of being hoisted onto the back of a lorry to be towed away. I rushed out in my dressing gown and produced the blue badge from the car, they didn't take the car away but I got fined again. This was too much of a coincidence, someone close by was watching my car and despite knowing I was disabled, reporting my 'transgressions'. Having ME often gives you 'memory fatigue' and I became so anxious as to whether I had remembered to display the blue badge I would sometimes go out in my dressing gown in the middle of the night, in the cold and rain, to check.
Spiteful anonymous notes started appearing, pinned under my windscreen wipers or pushed through my door - by the style of the handwriting from different sources. I can't park on the disabled space without a badge and if we are going out or away in TheBedSock's car I need to take the badge with me, so I can't leave the car on the space. A main complaint from those too ignorant to understand or find out the law regarding Disabled Parking was that I "should get my car back on my own space."
I began to dread returning home from holidays to find yet another dumped on my doormat or worse that someone had 'keyed' my car. Not knowing who these were from made us close in on ourselves and distrust almost everyone.
Then one day a community policeman called round to talk about the mock-up of the front-page of the local paper, slipped through many people's doors, deriding the disabled people in the street. I hadn't got a copy - surprising as I was one of the disabled people mentioned (the one with the 'Beatle' (sic) who had acquired the disabled space so I could admire it out of my window!). I was too stunned to be overly worried by this - everyone blamed 'the taxi driver' (I suspect because he had been heard to moan about the amount of disabled spaces on the road). I don't think it was him. I think it's the same supposedly respectable man who walked past my house when I was deadheading plants in my tiny front garden last year and with his head down, muttered loudly under his breath "Look at that! She's in the fookin' garden when there's fookin' white lines on the road". He seems to have a thing about disabled people gardening!
It wasn't just in our street either, driving to our local shops I saw a car belonging to one of the local businesses parked without a badge on the disabled space I had hoped to park in. Such is the difficulty parking in this busy little area that I have on more than one occasion had to drive home empty-handed having been unable to park near enough to the shops to walk the short distance my fatigue levels often dictate. This time I managed to park near enough but as I walked past the office of the culprit I popped my head around the door and politely informed the man working behind the desk that one of their cars was parked on the disabled space without a badge. I thought nothing more of it but when I came out of the bank a man was standing in right in front of my face, frothing with rage! Stunned, I asked what the problem was. It was the man from the office and apparently, despite his committing an illegal offence, everything was my fault! I walked off trying to ignore him but he pursued me up the road and spat "You fucking poisonous old witch!" at me. Amazingly a load of people sat at outdoor cafe tables and walking around the area witnessed this and not one intervened! Totally shaken, I managed to drive home and phone the police. They did caution the man on this occasion.
Worse was to follow. As Brighton has become more and more congested and parking more difficult the Council have seen fit to roll out Residents Permits zones. A new zone, finishing at the bottom of our road, moved all the parking onto our streets, packing them with builders lorries, commuter cars, those who didn't want to pay for permits in their zone. This meant that throughout the day it was difficult to park, and after 7.00pm almost impossible. TheBedSock, returning from work would face a long walk from wherever he could find a parking space. Rather than turn up at a local residents meeting to discuss this problem (as TheBedSock and I did) neighbours' eyes turned with envy and anger to those most vulnerable in the road. Whilst TheBedsock and I had always tried to park as unselfishly as possible, we now found a pretty much permanent procession of cars parked illegally, overhanging the disabled space making it difficult (and often extremely painful and tiring for my muscles) to manoeuvre out. Tempers were running high and I awoke one morning to find that in order to park their own car, someone had moved the scooter of a neighbour (who was away) onto my disabled space blocking my car in. Unable to move the scooter myself I contacted the Parking Authority who said the only action they could take would be to remove and impound it. As this would cost my neighbour a lot of money and inconvenience to reclaim I didn't pursue it but was unable to go out. When TheBedSock returned (he is often working away) we finally moved the scooter off the space so I could free my car. The next night I heard some noise outside and went out to find a man moving the scooter back on to my space in order to park his car. It was dark and I was in my dressing gown but I called out to ask what he was doing and was it him who kept moving the scooter onto the disabled space. He gave me a mouthful and I got my camera and photographed him and the car. Stupid mistake! The man then shouted threateningly at me "If ever I see your car off that space I'm going to get you!" I slammed the door and when TheBedSock got home from work he found me sobbing hysterically. We agreed to phone the police. At that time I had no idea that the man was in fact a fairly close neighbour (had I known I wouldn't have bought the police into it but at the time there were a lot of somewhat insalubrious people parking around the area). When we finally attended an interview at the police station it was with an unsympathetic policeman who seemed intent on telling me off and catching me out. "If it was wrong for that man to move the scooter on to your space then surely it was wrong for you to have moved the scooter off?" He ended by totally disempowering me saying "You shouldn't confront people unless you want to see your husband's brains splashed across the pavement." As we left the police station, me sobbing with total angst, we noticed two police cars parked on the disabled spaces outside. I felt worse after the police interview than the original confrontation and would never involve the police in my business again although they did contact the man and suggest that threatening 'disabled women' wasn't very nice. And what of the scooter owning neighbour? When I started to try and explain the situation to him he cut me short as he didn't want to hear anything bad about the person who had threatened me as their kids played together. I hadn't been going to mention that part as I didn't think it fair to involve more people than necessary. No one has shown me the same courtesy. When the wife of the threatening neighbour walked past me coming out of my house recently she turned to her child and said "We don't like her!".
One of the many problems that people with long term ME are likely to encounter is increased anxiety, partly caused by the weird things mental and physical you have to cope with and partly because of your alienation and isolation from society. Over the years the few friends I had left in Brighton moved and making and sustaining new ones is difficult when you have so little energy to give so I have no local support network. Over the years I have developed, and am trying to deal with, both an acute sense of 'stranger-danger' and chronic anxiety. This is horribly exacerbated by the 'community' I live in which has failed me on every level. I am now too anxious to spend time in my front garden, or to clean my car outside my house, or to attempt to walk to my local shop, in case I am being watched... "Look at that, there's nothing wrong with her!"
We want to move away. I always felt my identity was in Brighton but now feel it's 'No town for disabled people'. Perhaps the problems will follow us elsewhere, though certainly our new home must have off-street parking. I want to be somewhere that will restore my faith in humanity.. I want to have a 'Molly' living and laughing next door..
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